Consensus on high priority outcomes to be used in the evaluation of services for autistic adults: results from a “CBPR-Nested Delphi Process”

People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify 1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and 2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven “Delphi process” within our community-based participatory research (CBPR) approach in what we are calling a “CBPR-Nested Delphi Process.” The process allowed us to reach full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.